I guess I'll finally join the club

[jbud70]

Hello,

Been a lurker here for a few months while fighting the beast. I'm a 36 year old male who took Clindimycin for seven days, two days later it started. Took two weeks before I got a dx. Went on Flagyl for 10 days, relapsed in 4, then went on it for 20 days (and for some reason the second round gave me the horrible side effects), relapsed in 9. Went on Vanco (125mg 4xday), and felt really good during and after, but relapsed today (6 days later).

My question is, does anyone know why the first two times I relapsed, I had 24 hours notice with 'signs', but this time I had no warning? I felt pretty good yesterday and then as soon as I woke up this morning, I was off to the races.

I will admit, my case is pretty mild compared to some here (my heart goes out to you), as I have the 'd' and a bit of cramping. No fever or any of the other nasty stuff.

Just wanted to introduce myself and officially join the 'club'.

Thanks for listening,
Josh

[ms7168]

Josh,

This thing is unpredictable to a lot of us. I have been struggling with it since May. I was in the hospital and had Clindamycin IV which is what did me in. When I was first diagnosed I took 10 days of Flagyl which did absolutely nothing for me. Then I got Vancocin 250mg and the difference was like night and day. I just finished the fifth round of Vanco and currently have fingers crossed as we all do. I have tried tapering it and pulsing it. One round was taken along with Rifampin.

None of my relapses were the same. One I had some warning. The others I did not. On two I ran temperature for a few days and felt awful due to that. I have usually relapsed within two or three days. The latest one was after a full week. When tapering I was down to one or two Vanco per day and it was keeping me well. No problems at all and no difference in the 'd'.

I am currently trying HMF Powder. I read here that it works well and it costs less than some of the other probiotics. I had to buy it online.
So far it seems to be doing a good job but it really hasn't been long enough to know. I just completed the Vanco on Saturday.

Good luck to you. You say that you "haven't had it as bad" but I think the fact you are relapsing is significant. What does your Dr. say?

[Christina]

Hi, Josh and welcome to the group. Since you've been lurking for awhile, I'm guessing you have read most of the articles and FAQ's about C-diff. If not, I urge you to do so.
Your experience with C-diff unfortuanetly is very common. Relapses can and do occur sporadically and present in different ways at different times.As I'm sure you know, they can occur anywhere between 1 day and 6 weeks off of meds. and very rarely occur between 6 and 12 weeks off.
I had C-diff for a year and a half, having 12 relapses or so. I can say that each one was pretty different and the timing almost never the same. Once I relapsed 6 days off and tested positive and several times made it just to 2-3 days short of 6 weeks. It is very frustrating.
It seems as though you have a Dr. who understands this and that is half the battle. You will beat this, be patient it always goes away.
I hope this round of meds. will be your last. I'm keeping my fingers crossed.

Christina

[jbud70]

Thanks for all helpful info, for the first time since this nightmare started I don't feel alone. This is a great group.

Actually one of my problems during this last two and half months is doctors. I do have a primary GP, but he was clueless about c diff. Had to look up everything on his Palm version of the PDR to see how to treat it. Since seeing him, everytime I would relapse I would have to call for an appt that day and take whoever I could get (it's one of those 50+ doc mega practices), so I've seen a different doc everytime. Today's doc was acutally pretty good as he had a collegue who suffered through c diff. Upped my dosage of vanco to 250mgx4 for 15 days and gave me a referral to a GI doc. He was the only doc in this practice to admit, "We are in over our head when dealing with this many relapses."

Strangest thing is that I am feeling better today than yesterday, so perhaps I'll envoke the 3 day rule I've read about here. Hate to start pounding down the vanco again, if I don't need it.

Once again, thanks for the support. My wife has done everything in her power to be supportive, but even she admits, not having suffered through it, she cannot possibly understand what it is like. It helps a lot talking with kindred souls who suffer through the same illness.

Thanks,
Josh

[ms7168]

Josh,

My PCP is also fairly clueless where c-diff is concerned. The only cases of it he has had before were all cured with only one or two rounds of meds.
One nice thing about it though is he is totally willing to let me experiment and try things that I read about here. The latest thing I have done is order some HMF Powder and have started using it. Still a little early to tell if it's going to turn the trick or not but I am staying well on it so that's good.

I think you will be happier with the 250mg Vanco. It also comes in 500mg and some people require that much. Usually 250mgx4 is the prescribed dose. The actual Vacocin literature says "500mg to 2000mg per day" which is any of the three sizes x4.

I hope you have a prescription plan and one that covers Vacocin. It's expensive otherwise. On mine the co-pay is $27.

[jbud70]

Yeah, my prescription plan covers the cost of the Vanco. I love the way Walgreens put the "Your insurance just saved you $1700" message on the Rx slip.

As I always try to find a positive angle in any situation, at least I'm getting some return on all those years of paying into health insurance.

[jenpriv]

Josh, I'm so sorry to hear you are facing C Diff. My daughter had it for over a year when she was about 6. (The time is all blending together now). She also has Epilepsy and her C Diff made her seizures that much worse as we could not keep her meds balanced, the Vanco and Flagyl interfered with her meds, etc. Ugh! It was a long, arduous task - but she beat it!

She ended up doing a pulsing regimen that I developed by studying this site and talking to many of the wonderful people. We found a pediatrician that admitted she knew nothing and was willing to support this "experimentation". Lily also took Culturelle three times a day. We also were sure to reduce her intake of sugars in a big way. This combination worked for her.

We still watch for it - as she had so many relapses over that year we are a bit gun shy. But hang in there - hoping this is your last round of Vanco. Take care and let us know how you are doing.